Expanding Awareness to Researchers in Immunology

The IPPF Leadership was awarded one of only four scholarships to participate in a pilot program launched by the American Academy of Immunologists

(www.aai.org) to foster working relationships between Patient Advocate Groups and working scientists in the area of immunology. Immunology is the study of the molecular and cellular components that comprise the immune system. A broad branch of biomedical science it covers the study of all aspects of the immune system in all organisms. It deals with, among other things, the functioning of the immune system in states of both health and disease; malfunctions of the immune system (autoimmune diseases); and the physical, chemical and physiological characteristics of the components of the immune system. It is, in essence, the underlying foundation of research that drives research about specific autoimmune diseases such as pemphigus. Immunologists help identify how the immune system kicks into gear, into overdrive, or fails to fight foreign invaders.

The AAI is the largest advocacy group supporting immunology work. This year the AAI focuses on the funding crisis at the NIH (National Institutes of Health) which provide most of the scientific/medical research funding in the US. Research funding is clearly the most serious challenge confronting the U.S. scientific community in the past decade. From 1998-2003, science funding enjoyed a doubling of the NIH budget. Unfortunately, for

the past five years, NIH budgets cuts do not keep pace with the sciences inflation rate. As a result, NIH’s purchasing power has dropped by about 10 percent since the “doubling” period ended in FY 2003. There are many negative consequences of this funding crisis. Many young trainees, who have invested enormous time and effort in their training, have been discouraged by the prospect of an unwelcoming system and a difficult career path. Too many simply choose not to live out their dreams to become research scientists and leave the field entirely. The main recourse for the new or established individual investigator is to exhibit frustration and anger with the grants system and to spend enormous amounts of additional time writing more new grants and preparing resubmissions — all leading to less time and interest in focusing on science advancements.

AAI places a major emphasis on Public Affairs. Under the leadership of Bill Green (Chair of the Committee on Public Affairs) and Lauren Gross (AAI Director of Public Policy and Government Affairs) the Public Affairs committee decided to reach out to patient groups to allow them to meet immunologists and future scientists interested in each of our own research areas for example, I spoke with many focused on B-cell issues which is a culprit in P/P. We also pledged to help the AAI include real and passionate stories in congressional advocacy, as meeting patients is what moves action! Advocacy and educational efforts by AAI that target Congress and disease-specific interest groups can influence funding priorities.

We are in an incredible era in immunology when the scientific advances in labs are now being translated into new approaches in disease prevention (i.e., the HPV vaccine), diagnosis (i.e., subsetting of lymphomas and leukemias using monoclonal antibodies) and in therapies (i.e., the success of monoclonal antibodies and fusion proteins to interrupt key components of the immune response). We thank the AAI for the opportunity to spread the word about P/P research opportunities, for their help in connecting us with advisors for our disease registry and for their generous spirit in reaching out to the patient community.

It is a time for all of us to celebrate these achievements and the success of immunology in advancing medicine and in advancing fundamental science. It is a time to encourage further support of research to capitalize on new technologies and the advances that have already been made. Working together the IPPF, other patient groups and the AAI, plan to do just that!

About IPPF

The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.Read more »